No State Medical College In Madhya Pradesh Offers Rare Disease Treatment Despite Super-Speciality Tag

Bhopal (Madhya Pradesh): Despite having super-speciality facilities, no government medical college in the state has taken the initiative to open Centres of Excellence (CoE) for the treatment of rare diseases.

The National Policy for Rare Diseases 2021 provides for the diagnosis, prevention, and treatment of such ailments, with the Central government providing a fund of Rs 50 lakh per patient.

According to doctors, several rare conditions require specialised care, including Lysosomal Storage Disorders (LSDs) which need Enzyme Replacement Therapy (ERT), metabolic liver diseases requiring liver transplantation, Autosomal Recessive Polycystic Kidney Disease (ARPKD), and Autosomal Dominant Polycystic Kidney Disease (ADPKD). Other conditions include Phenylketonuria (PKU), severe food protein allergy, cystic fibrosis, Duchenne muscular dystrophy, spinal muscular atrophy, osteopetrosis, and Fanconi anaemia.

National executive member of the Federation of Medical Association (FAIMA) Dr Akash Soni emphasized the need for local facilities. "There must be rare disease treatment centres in medical colleges in the state. At least an initiative should be taken in this regard.

The Central government issues a fund of Rs50 lakh per case as medical treatment is very costly. Three medical colleges are developing super-specialities in Bhopal, Jabalpur, and Rewa. These colleges must have such centres," Soni said.

Former NHM director Dr Pankaj Shukla also highlighted the gap in state-run institutions. "There must be such Centres of Excellence for the treatment of rare diseases.

While AIIMS, Bhopal has one, the health department should take the initiative at its own medical colleges. Super-specialities are being developed at four medical colleges in Bhopal, Jabalpur, and Rewa, while the Indore medical college already has such facilities. Under these circumstances, there must be a CoE," Shukla said.